• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. C

    Cardiopulmonary responses to exercise in an individual with ME/CFS during long-term treatment with intravenous saline: A case study (Davenport 2020)

    Happy to hear it is helping you, Are you paying for it privately or were you able to get this covered? Would love to try this, but the commercial IV clinic's charge over $700 for a NAD infusion.
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    Cardiopulmonary responses to exercise in an individual with ME/CFS during long-term treatment with intravenous saline: A case study (Davenport 2020)

    I have severe ME and have been receiving 2L of saline per week for just over 12 months. It has improved my orthostatic tolerance, cognitive function and energy envelope. I have not fainted since starting. Before starting I was on a slow constant decline in functioning. It has helped me more then...
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    Abilify- Stanford Clinic Patients

    I had a Neuroquant brain atrophy MRI done recently which showed my entorhinal cortex was in the first percentile of volume compared to other people my age. Couple other areas were also under 5th percentile. Total volume 35th percentile. Almost whole left side of my brain was smaller then...
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    Weird ridges on fingertips, anyone else?

    From Dr Paul Cheney http://www.tldp.com/issue/157-8/157pub.htm Also there is a page on MEpedia about finger print changes https://me-pedia.org/wiki/Fingerprint_change
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    Weird ridges on fingertips, anyone else?

    Yes! I can't get the finger scanner to accurately read my finger tips.
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    Current fav MCAS med: Phenibut

    Phenibut is illegal in Australia.
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    in the USA, is it possible for a patient to receive IV saline every day?

    I'm not sure sorry, I'm from Australia. There are quite a few Facebook groups which discuss saline infusions for POTS and some that include CFS. To be clear, I don't think it's a good idea unless you can't drink.
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    in the USA, is it possible for a patient to receive IV saline every day?

    Yes, many people with POTS/dysautonomia go on daily saline infusions and get a central line. This only happens in the USA. No other country does this except in exceptional circumstances. It is dangerous due to serious infection risk.
  9. C

    Ron Davis Is Evaluating a PEM Wearable Device

    Wow, that would be really cool! Neil McGregor found lowered lactate and lowered creatinine. Maybe it could detect lowered creatinine or increased HDAC? https://www.ncbi.nlm.nih.gov/pubmed/?term=HDAC+chronic+fatigue+syndrome
  10. C

    IDO Metabolic Trap Hypothesis Published Today

    Does this mean we can induce ME/CFS in 75% of the population by elevating their tryptophan levels?
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    Another ME death on April 29th 2019: Jacquie Beckworth aged 23

    Her death is tragic and I have been following her story over the last few years. There is strong evidence to suggest that Jacquie suffered Munchausen syndrome - or Munchausen by internet and died as a result. Her doctors wanted her feeding tube out but she refused. She also inisted upon and...
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    Pregnancy, birth and ME/CFS- my experience

    Hi Bookworm, how have things been going?
  13. C

    Emerge Australia ME/CFS International Research Symposium March 12-15, 2019

    Does anyone remember which heavy metals Prof Ron Davis said 1/3 of patients were high in? I've just got a hair metal test back stating my arsenic levels are 72x higher than the normal population! @Learner did you treat just by taking ALA?
  14. C

    How Do I Get Rid Of A Cold Sore?

    Also take a large dose of oral zinc and lysine which helps.
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    POTS and Spinal Fluid leak...

    Thanks - I am not, looks like I could benefit from some glutathione/detox help. Yeah it's frustrating being this hypersensitive. (I cannot find anything on the internet about HBOT causing headache... just that it treats headache. So I don't know how to prevent it in future)
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    POTS and Spinal Fluid leak...

    That's interesting. I had my first 'dive' yesterday at 1.3 for 60 minutes. I experienced 5/10 pressure headache lasting 12 hrs, muscle twitching whilst in the machine and mild nausea after. This morning I have a big reduction in muscle pain and some residual headache. Apparently muscle twitching...
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    Mitochondrial and Energy Metabolism Dysfunction in ME/CFS — Myhill, Booth and McLaren-Howard Papers

    Thanks for pointing that out. The bottle I have hay a different list of ingredients and doesn't say arginine. I am not sure why,maybe they changed the formula? Holy cow, I clearly need to boost my amino I take. Sorry if you have already said this but are you getting this professionally...
  18. C

    Starting Copaxone

    How are you two going? Just letting you know I am thinking of you and you are not alone. I would take on some of your fatigue if I could Martin.
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    Mitochondrial and Energy Metabolism Dysfunction in ME/CFS — Myhill, Booth and McLaren-Howard Papers

    I would just like to add that Pretorius amino acid complex was recommended to me by Prof Neil McGregor. It does not contain tryptophan or arginine. Not affiliated at all. (I am extremely sensitive to arginine even though I am low in it - 1/6 of a dose left with with a day of air hunger and...
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    Emerge Australia ME/CFS International Research Symposium March 12-15, 2019

    Dr Bruce Wauchope from Bedford Medical Clinic, Adelaide stating on record that the PACE trial was fraudulent and calling for guidelines promoting 'malpractice' to be changed.
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    Hypertonic saline for POTS/ ME/CFS

    Bolding mine. I think this is useful for fluid resuscitation. I think it would dehydrate the rest of your body and is not a good idea of you are already stable.
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    Is wearing sunglasses and ear protection a helpful form of rest?

    I am wondering if attenuating sensory input would help your brain rest. Is it a good idea for those with mild sensory sensitivity to use sunglasses and/or ear protection? How is resting from sensory input different from not exercising. I understand for most conditions there would be concern...
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    Emerge Australia ME/CFS International Research Symposium March 12-15, 2019

    Just looked them up - 'Hexoskins' Would be good for monitoring HRV, sleep and general activity. https://www.hexoskin.com/
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    Hypertonic saline for POTS/ ME/CFS

    Interesting. My basic understanding of osmosis makes me think this would pull water out of your body into your bloodstream. Would the increase in BV dehydrate the rest of your bodies cells? Certaintly not one I would try without fully understanding it and the potiential risks.
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    Comment by 'Chelby' in 'I came CFS out! For the community'

    Yes would be great to hear you in Spanish as well :) goodjob
    • Chelby
    • Blog entry comment
  26. C

    Study calls for ALL organophosphate pesticides to be banned (OPs are linked to ME/CFS and GWI)

    Could a parents exposure to to organophosphate cause ME/CFS in their kids? One of my parents has aerotoxic syndrome :/
  27. C

    Metabolic Trap: Transient tryptophan depletion

    While I am not bright enough to understand the science - I do know severe calorie restriction/fasting eliminates PEM by 95% for me.... I just can't stick to it for long. This could explain it. Or more worryingly, it could be the opioid increase fasting creates which masks the PEM.
  28. C

    An Urgent Question

    I wish I could be of more assistance, what about a patient advocate?
  29. C

    Alcohol Tolerance Poll

    The vasodilator effects of alcohol is what does me in. Last time i drank, I collapsed and my friends had great joy dragging me around by the arms lol. It enhances the POTS symptoms and is not enjoyable at all!
  30. C

    How do you rest?

    I rest whenever I feel I should. I spend most of my day, laying on the couch with my feet up and browsing my laptop... To be resting I need to have my feet up, closing my eyes doesn't make much difference to me. I just roll into a fetal position every now and again and drift in and out of naps...